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carcinoid

The C Word

02.20.15

Cancer cells

Cancer is no Stranger

It would be difficult to find someone today whose life has not been touched by cancer. Unfortunately, this group of diseases is pervasive in our society and around the world. According to The American Cancer Society, or ACS, there will be an estimated 1,658,370 new cancer cases diagnosed in 2015.

At the young age of five I became acquainted with this horrible disease when my grandmother’s life was taken by breast cancer. I was in kindergarten and I remember crying each day during nap time. My teacher would ask me why I was crying but I could not muster any words. We were very close and I was devastated. As an adult, my father-in-law died of liposarcoma and my grandfather died of kidney cancer. However, well over a hundred friends and family members have been diagnosed with cancer, successfully completed treatment, and now live cancer-free. I also was an eyewitness to a miraculous and instantaneous healing of a woman with cancer at a church altar. Another woman I know was diagnosed with breast cancer and, after much praying by the warriors around her, the doctors could no longer find any trace of the disease.

The Worst Day in your Life

I have recently joined the club where no one wants to belong. Members feel bound together by what they have in common. They become instant friends and share things they normally would not with a complete stranger. I have heard story after story about the worst day in their lives, the day they found out they had cancer. While the stories are horrifying and filled with intense emotion these things are not what makes the stories challenging to hear.

D

The C Word

Arguably, I would say the day you receive your diagnosis of cancer is not the worst day of your life. The day you are diagnosed is not the day you got cancer. A person has had cancer long before the day a doctor uses the c word. Most people have some symptoms and are undergoing testing to find out what is wrong. The day you are diagnosed with cancer is one of the best days of your life because this is the day you can begin to do something about it! This is something I did not have the benefit of for a very long time. According to my new doctor, I may have had undiagnosed cancer for 15 years. Likewise, I struggled for many years before I knew that I had a mast cell disease. I have met countless people over the years struggling with life altering or incapacitating symptoms searching in vain for an answer. When you don’t know what you are up against you can’t do anything about it. If you don’t have a diagnosis you can’t begin treatment.

The Fight

I would say the worst day in your life might be the day you quit living life, I mean really stop appreciating all the beauty, goodness, and opportunities around you. Maybe it’s the day you let things come before people or when you quit believing in miracles. But beyond all those things I think the worst day of your life is probably the day you give up fighting. Recently my friend Nicole over at allergicchild.com told me about a book she is reading called You are the Placebo by Dr. Joe Dispenza. She shared a story about a man who was told he had cancer and was dying. He got worse and worse until they found a drug that would make him better. As he began to take the drug he, in fact, got better. When he was told the drug was not making any difference he got worse again and then died. When they did the autopsy they found he never had cancer to begin with. I have not personally read this book yet but think this story makes a valid point about hope, mental disposition, and the will to fight and live. Now, I’m not saying positive thinking is the answer to all of life’s problems. If that were the case no one would die and only grumpy people would be sick. However, I do believe the mind is very powerful, God made the human brain more amazing than we know.

Carcinoid cancer

Treatment = Hope

There are lots of reasons for hope today. New treatments, advances in technology as well as scientific breakthroughs all provide better outcomes than ever before. The ACS reports a slight increase in the occurrence of cancer between 1975 and 2011 yet the fatality count is greatly reduced. There is a treatment I hope I will be a candidate for called targeted therapy. Genetic testing is done on the tumor to determine which gene is malfunctioning and which proteins are being given off. Then a drug is made specifically for that tumor, so it will not return. As science progresses more and more treatments will become available.

The Struggle is Real

We will always have problems. This is not heaven. What is it that you face that seems bigger than you? Are you being called to do something waaaaay out of your comfort zone? Are you struggling with finances, relationships, addiction, or attitude? Honestly, most people will struggle with all of these issues and more in the course of their lifetime. The question is not if we will struggle but rather how we deal with the struggle when it comes.

Strength

When challenges come where do we find the strength to deal with them? Do we call on our family and friends? If so, what happens when those people, well-meaning as they are, let us down in our time of need? As much as people love us they are human, after all. In May of last year we found out accidentally that the swelling and constriction in my throat got significantly better after being at the beach; perhaps due to the lack of tree, grass, and weeds that make me so sick. After moving to Florida and looking at houses on or near the beach I have been reminded over and over again of a song I learned in children’s church many years ago. It talks about two men. The wise man built his house upon the rock while the foolish man built his house upon the sand. The rains came down and the floods came up and the house on the sand went splat! (Can you picture me doing the hand motions? ) It’s a simple children’s song that exemplifies a very big principle. If our source of strength is built on the wrong foundation, when troubles come our world will crumble and fall. I place my trust in The Rock, which trust me is not an actor in Hollywood.

Psalm 28.7 The Lord is my strength and my shield; my heart trusts in him, and he helps me.

My heart leaps for joy, and with my song I praise him.

My new Birthday

The day I was told I had cancer was not the worst day of my life. January 20, 2015 was the best day and represents a new beginning. It is the day I could start my journey back to health. It opened the door to new treatments and options that have never been available to me in the past. The road that lies ahead of me will no doubt test my perseverance, strength, and determination. It will also provide opportunities for those that surround me to love, help, and support me in heroic ways. It will provide me with healing, either through the hands of a gifted surgeon or at the hands of My Heavenly Father.

Beyond Me

The months ahead are very much beyond me and my abilities. This is the latest song added to my Soundtrack of Life, which is a compilation of songs that speak to how I think and feel as I make my way through my life each day. I leave you today with Toby Mac’s song “Beyond Me.”

Hope and healing,

Christal

 

CANCER.ORG Cancer Facts and Statistics 2015 | Research | American Cancer Society In-text: (Cancer.org) Bibliography: Cancer.org,. ‘Cancer Facts And Statistics 2015 | Research | American Cancer Society’. N.p., 2015. Web. 13 Feb. 2015.

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

 

 

 

 

Christal
Filed in: carcinoid | Things God is teaching me

What Just Happened?

01.26.15

image

It has been a long road since my last post and we have only started this journey. In my last post I shared my drs news that I may have a carcinoid tumor and was in need of a test to find the exact location. The test is called an MRE, which is a fancy MRI with two different contrasts and a glucagon injection in conjunction with some advanced magnetic manipulation of your bodies cells. Due to my Mastocytosis and past reactions to contrasts the plan was to do the procedure under anesthesia, intubate me to protect my airway, place me in a ventilator, do the test and keep me on the vent until the swelling went down. Lee flew in from Oklahoma and took the whole week off not knowing what to expect. We drove five hours one way to the major medical center, checked into the hotel, and got ready for the weeks adventure.

Testing Day 1 MRE

I finally had the test and it went better than expected. I did not need anesthesia but they kept the anesthesiologist just outside the room just in case. I tolerated both contrasts well with premedication. Praise the Lord! We returned to the hotel for the evening instead of returning to the Panhandle area as was reccomended in case of delayed reaction. At 8pm that night I received a phone call from my dr. The MRE had revealed two masses in my intestines that were believed to be malignant. A colonoscopy was scheduled where biopsies would be taken.

Day 2 A New Feeding Tube

This was a pretty easy day. I ask if they would change out the tube without any anesthesia and they did. We went back to the room and watched movies and slept.

Day 3 Colonoscopy

It was a very busy day! A teaching hospital filled with students and a patient with two rare conditions caused lots of activity. After a long hard day the biopsies were not able to be collected as the tumors are on the outside of the intestines. I was kept overnight in the hospital for observation because my heart rate was elevated as I was coming out of anesthesia.

Day 4 What Just Happened?

At 10pm I received a phone call on my floor nurses phone while I was in the hospital. Another MRE was planned to check the liver and pancreas and see if the cancer has spread. They were going to come get me in the night and had a few questions. A consult with surgey was to follow the test to talk about obtaining the biopsies.

No MRE overnight. Blood work started the day off at 5:45 am and from that moment on the flurry of activity never stopped. Morning rounds, visits from the dietician to evaluate my malnutrition level, the TPN department to evaluate my current formula and if was meeting my needs, X-rays ordered to check my PICC line placement, I had no fewer than five blood draws, the admin lady came twice and never did get a chance to say little more than her name before another team would jump in. What began as a 24 hr hospitalization for observation ended with a conference with the chief of colo/rectal surgery who proposed a 2 week hospital stay, the removal of my ilium, cecum, and part of my colon, giving me a colostomy bag until my Mastocytosis inflamation went down (which would pretty much be the rest of my life as inflamation is a chronic standard with mastocytosis), staying on TPN, and not allowing any water by mouth or tube for the foreseeable future. She listed about 10 different reasons why I was going to be a very complicated case…… and that was just to treat one tumor. She was not going to do anything about the other. If there were any more tumors found in the liver or pancreas they would bring in other teams of doctors to handle those. They didn’t have TPN for me for the 2nd day and would not let me use my own. I checked myself out of the hospital against their wishes and we began the five hour trip back to the condo where I am staying.

Before surgery department could come I really felt like the Lord was leading me to begin the process to get into the New Orleans Louisiana Neuroendocrine Tumor Specialists. Lee called them and got me set up in their system. About an hour after leaving the hospital, I got a phone call from the specialists in Louisiana. They gave me a list of what records they would need. They are preparing an email for me with orders for additional tests needed. When I get all of my required info to them the team will review my case. They will either schedule me an appointment to see them, request more testing, or give me other guidance. If they agree to take me my appointment would be about two weeks later. I feel very good about this team and the treatment options they offer. They literally wrote the standards for neuroendocrine tumors. Although I hope I can get the needed tests and I will be accepted, I have the peace the passes all understanding. God has been very active and real through this whole process, I see his fingerprints everywhere and His whispers of love are continually in my ear. We arrived back at the condo and got a very good nights sleep. I am filled with hope as I continue to focus on who is really in control. My Father has got this, he tells me so everyday, all day long, everywhere I go like in these verses from 2 Corinthians 4:16-18 and this song from Mercy Me “Greater”. May you find your source of hope and healing from the Great Physician.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

Hope & healing,

Christal

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: carcinoid | feeding tube | PICC Line | Things God is teaching me | TPN

Thankfulness

12.21.14

The night before Thanksgiving I received a message from my doctor. She suppected carcinoid tumor and wanted me to have an octreotide scan. At my last appointment she had ordered dozens of tests in the hopes of determining what was at the root of my most recent round of medical problems. As the test results began to pour in, some abnormalities were cause for concern. My chromagranin A and gastrin levels were elevated. These test results paired with many of my symptoms give reasonable concern for Carcinoid tumor. This is in addition to my Mastocytosis. I spoke with my hubbie, did a little Googling, made a list of ten things I was thankful for and went to sleep peacefully. That may sound strange to many of you. Why would I be thankful after learning that my doctor suppected cancer. I have walked with The LORD long enough to know that He is in the redeeming business. He has continued to show up and make things work out in ways I never would begin to think of or hope for. Whatever comes my way, I know my Savior will take care of me.

What is carcinoid tumor?

Carcinoid tumor is a rare cancer that is often nicknamed the accidental cancer. Often carcinoid is “discovered” while investigating another ailment rather that being the primary diagnosis. In fact, one in every 200-300 appendectomys reveal a carcinoid tumor. They are most often located in the GI tract and are slow growing. All neuroendocrine tumors, including carcinoid tumors, secrete hormones. However, what they secrete depends upon the type of tumor and the tumor location. These hormones can be measured with blood tests.

Chromogranin A

Chromogranin A (CgA) is a protein that is excreted into the blood and common to most neuroendocrine tumor cells, including carcinoid, and is a general tumor marker. CgA normal range is 1.9-15, mine was 328 or nearly 22 times the high level.

Gastrin

Gastrin is a hormone produced to help with digestion but can be elevated in carcinoid tumors that are located in the stomach, small or large intestines. A normal Gastrin is anything less than 100, my level was nearly 1400.

Octreotide scan

Octreotide scanning is useful to help determine a carcinoid tumor’s location, size, and extent of metastases. On the day of my test, Cheryl drove me to the hospital. We waited with anticipation not only for good test results but that the test itself would not cause any mast cell problems. Radiological tests that require dyes, contrasts, or isotopes of any kind have been problematic in the past. The last thing any of us needed right now was another anaphylactic reaction. I premedicated according to The Mastocytosis Society recommendations and prayed for the best. I informed my tech of my condition and he went to find the radiologist. When you have a rare condition, often medical providers are skeptical that you truly have what you say you do. My family, friends, Cheryl and I prayed over this test and Our Father prepared the way. When the radiologist arrived in my testing room he told me they just had an education the day before where they talked about patients with mastocytosis. Praise The LORD!! He brought several people with him and they were prepared for any possibility. I dosed again with more medication just prior to the injection. Octreotide, a mix of radioactive sailine and a synthetic hormone, was injected into my vein. After waiting to make sure there would be no complications we left the hospital for four to six hours while the octreotide circulated. As it travels through the body, it attaches to the tumor cells where it can be seen on a special imaging machine like the one pictured above. I was placed on that skinny table and slid into a donut looking ring. Two square scanners, one above and below were placed very close to me. The one on top was within one inch of my nose. I had to lay very still while to sensors picked up the radiation I was emitting. Little by little I was backed out of the doughnut creating a whole body image. The next test is similar. I was slid back into the doughnut and the two square scanners were rotated around me creating a 3D image. The tests are repeated for the next two days for a total of three days. The areas that are glowing and bright indicate where the octreotide has been taken up. On the screen I could see my kidneys, liver, and bladder along with an unidentified shape in the intestine area.

Over the last seven years I have had countless people ask me if I have cancer. My answer has always been no, I have mastocytosis, which is in the same category as cancer but instead of my body making tumors my makes too many immune cells. This makes me like a person who has a peanut allergy but to anything that can enter my body either through ingesting it, breathing it in, or absorbing it through my skin. The last few weeks have caused me to think about the possibility of having two rare disorders. Having a high immune system would certainly make me sensitive to the extra hormones that would be produced by a neuroendocrine tumor. Most of the symptoms of carcinoid syndrome mimic Mastocytosis. Could this be what has caused so many complications. According to carcinoid.org small tumors that have not spread can be cured with surgery alone. I wait with anticipation for the radiologist to read the scans, make a report and the doctors to establish my diagnosis.

Hope and healing,

Christal

 

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: carcinoid | Life with Masto | relapse | Things God is teaching me
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